About five years ago, my then 10-year-old son, Dallas, came home from school and Oprah was on the television. Jenny McCarthy was her guest and they were talking about autism. My son’s ears immediately perked up. My husband and I had recently explained to him about his own autism diagnosis. We simplified it by telling him that autism wasn’t good and it wasn’t bad – it was just a part of who he is. It is what made using a computer, editing a video or reading/decoding so easy for him, but it was also what made spoken language, sports and friendships harder for him. I had explained to him that we just used what came easy for him as a tool to help him learn things that were harder, but that he was probably always going to learn things differently than for others. He had accepted our explanation but now was interested in what they were saying on Oprah. Jenny McCarthy was very animated talking about her book and “warrior moms” and how they were actually “fixing” their kids with autism. Dallas turned to me and said “Mom, did you fix me?” When he asked this, my heart immediately sunk to the ground. I would never want him to feel like his autism made him anything less than anyone else. I would never want him to think he needed “fixing,” so I was careful with my response. I simply told him he didn’t need “fixing;” he was fine just the way he is. I then playfully asked, “Do you think you are broken?” and held my breath while waiting for his answer. He responded with a hearty “NO!!!” and went on about his business. The conversation shook me. It made me think back to the days when I was trying to fix him…to the days when all I wanted was for him to be “indistinguishable from his peers.” I now alternately laugh and cry at that goal. Dallas will never be indistinguishable from his peers and I would never want him to be at this point. He is who he is. He makes no apologies or explanations for his differences so why should I? He thinks he is amazing…and he is.
Things weren’t always so clear to me. Dallas was diagnosed at 25 months of age after a 10-month search for answers. Each time we saw the doctor and she said he was fine, I would feel relief for a day or so and then all my nagging concerns would return when he didn’t respond to his name, didn’t make eye contact, didn’t speak and would stand at the coffee table and spin toys all day. Finally at 25 months, we had a diagnosis, but no real answers. You always assume anytime you have a diagnosis that the doctor is going to tell you exactly what to do, but I soon learned that I was driving this bus and didn’t even have a GPS. I – was – lost. I turned to the Internet, determined that my husband and I were going to fix this and he was going to have a “normal” life. We made a lot of progress using a gluten and casein free diet, occupational therapy, speech therapy, the Picture-Exchange Communication System, self-modeling videos, Floor Time, and behavioral interventions – all with the help of the most amazing teachers and therapists. By the age of 6, he began using spoken language to communicate and we were able to phase out his picture system, but it was obvious around this time that there was not going to be a “cure” or a “recovery.” I soon found, however, that there was a great deal of peace and joy in acceptance.
Once the idea of recovery was taken off the table, I began to truly accept and appreciate who he is with all his little quirks, his strengths and even his weaknesses. We still did therapy but our goals had changed. We no longer wanted him to be the same as his peers; we wanted to focus on his strengths and help him to see just how awesome he is, all the while using those strengths to work on the areas he needed more help with. We wanted him to know he has a purpose, he has skills and he has value. We noticed along the way that he began to develop confidence and the ability to put himself out there, try new things and take risks!
Dallas is now 15. He starts high school next year and while his life isn’t perfect, it is pretty amazing. He competes in Special Olympics, enjoys movies, playing sports, going out to dinner, and even participates in social networking (i.e., Facebook) – things at one time we would have never imagined he would be able to do. He still struggles with friendships but he really enjoys hanging out in groups of teens. He does well in school and, with his amazing computer and video editing abilities, we feel he will find employment in the future. He has chores, responsibilities and an allowance. He has expectations and consequences. Some things are still really hard for him and my heart still breaks when we encounter individuals who don’t accept him or take the time to get to know him, but I understand these are challenges we all experience.
So, the next time you are in a restaurant or the grocery and a small child is melting down, please don’t automatically assume it is bad parenting or a spoiled child, rather give that parent an understanding smile, nod or wave. If you know someone who has a child with autism, don’t be afraid. I can guarantee you that that mom could use a break. Offer to watch him or her while the parents go to dinner. Even if they say no, and they very well might, they would appreciate the fact that you had offered. Keep offering. The parents will never forget what you did for them. You will soon find how amazing it is to be a part of a journey where nothing is taken for granted and every small step obtained is a reason to celebrate.